A Dr failing to understand Dementia, and the risk that poses

I had a disturbing appointment at my GP on Monday, one which I can’t quite get out of my mind.

I had a letter giving me an appointment for a “Medication Review”, okay, so this is just a review no need for my daughter to come with me.

I get into the Doctors surgery to be told this is a Dementia Review.  That is not what the letter says, I think but hey ho I have never yet had one of these before so I will go with it.

Dr C reads directly from the screen and I answer his questions.  They are short and succinct and not very useful to anyone really.

Dr C:   Do you have a carer?   Me: No     Dr C, mumbling to self ‘Oh there is not a box on here for not having a carer’       Failing number one, he knows me and understands I live alone and manage well.   Not all people with Dementia need carers for quite a while.

Dr C:  (he talks about this being a difficult question) Have you thought about an Advanced Directive, and DNR (Do Not Resuscitate) and have you got one?

Me:  Yes I have thought about it and I want DNR when the time comes, and I haven’t done one yet.

Dr. C gets a form out and starts filling in, ‘We can fill one in now’.  I answer general questions and he says that as my Daughter isn’t with me she will need to sign it, after I told him we had talked about it.

Here it comes…………..

Me:  Obviously I don’t want that now because I am fine.

Dr. C:  “This is an Advanced Directive for the future”

Me:  Yes, but I am not likely to have a heart attack now, my heart is healthy.  [I have recently had a heart scan and an angiogram and have been told my arteries are healthy and my heart].   And, I am capable of leading a perfectly happy life-style now. So not yet.

Dr. C:  This Advanced Directive is for the future 

He repeats this several times, and I am saying yes but not yet.  Then Dr. C says ‘maybe we can look at this on a yearly basis then’ and rips the form in half and places in the bin.

I am mortified.  I am more than that.  What just happened here?   This GP was suggesting, and filling out a form so that I would not be resuscitated should I need be in the near future, in fact it could have been next month even.  I have no intention of doing this until the time is right when my dementia is advancing rapidly.

What is scary, this GP appears to have no idea about Dementia at all.  The more I think of it I am very concerned that Dr. C could be a danger to patients.    How can this be happening today when there is more knowledge about Dementia than ever.  I realise now that even though when I ask him to explain things because of my dementia he just doesn’t get it.  He will just say the exact same sentence, so that I have even told him that repeating himself doesn’t mean I will understand any better!

I am changing Doctors rapidly because what if, that form had not been torn up and I was taken ill next week and needed resuscitation?  Obviously this is not the only reason, there are others that are equally worrying.

 

 

When the S**t hits the fan…

..Turn the fan off..and…what next?

Okay, I have been hiding a bit of a trauma from you all.  I moved, you know that.  I have a lovely little bungalow that needs updating.  Late November I got a quote from a builder to replace my back boiler from the fireplace with a new combi boiler siting it in the attic space.   Rip out my bathroom and replace it with a shower and a vanity unit across the end wall.  Along with some other things to do with the radiators, flooring, skirting boards etc..  Boiler replaced.    Bathroom ripped out………………………………………………………….

They start 3rd December and I returned home on the 27th to find the brick sized tiles I requested for the shower now – 6″ x 8″.  The shower tray the height of 19″, no problem because they will build a step up to it.

The end wall vanity unit now – a cloak room sized sink with a small cupboard underneath and a small toilet suitable for a cloakroom.

Then:   No work, nothing.   I have been conned.  I am left with no money and no bathroom.   Before you ask, of course I knew what I should and shouldn’t have done, but I have dementia, I live on my own and still make stupid and bad judgements.    The builder tells me he is going into liquidation (with my money).

I cried for a whole day and night, then stopped because it doesn’t help me solve it.  I feel so alone in trying to sort this out right now but I am not downhearted because it is not the end of the world really is it?     The provision for support for people with dementia here in the North East of England is quite frankly non-existant, so there is no one for me to phone and say I just need some support through this.

So, I phoned the Citizens Advise Bureau Consumer Dept and they gave me advice in what to do next.  I have sent a legal letter giving them 7 working days to complete my building works (I think that this is enough in the circumstances) which they have received.  Next Wednesday I have to get some money together and start the process of taking them to Small Claims Court to get my money back or try to at least.

I have just had a quote to complete the shower so that I can wash properly which is reasonable at around £500 to include parts and labour.  At the moment I haven’t quite got that so will be saving in the next month or so to get it done.   The rest of the bathroom work will have to wait.

Dementia:  When my Doctors tell me that it doesn’t really affect me much yet I will beg to differ.  I believe that my judgement is very poor now.  I have been thinking about this and wonder if it is to do with being unable to read peoples faces and voices, or negotiate in my mind whether the words people say to me add up or not.  How do people make a judgement on whether to trust something or someone?  I guess it can be a combination of things, including experience, how they look, or sound, that is greatly diminished for me these days.  But, that doesn’t mean I will make the same mistake twice!!

For now, I have turned the fan off.  I will deal with it day by day without worrying too much because right now there is absolutely nothing I can do to change it.

 

I feel angry…

Why oh why are there so many articles about how to prevent dementia by changing your lifestyle?  This Guardian article makes me go……. Grrrrrrrrrr!

Lifestyle changes could prevent a third of dementia cases, report suggests

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Before commenting, read the article please.

What I would like to say is that change your lifestyle to drink less, stop smoking, be more active, keep your brain active and it will make you feel better, make your health better but it WILL NOT STOP YOU GETTING DEMENTIA.

The research/study they must be using to suggest lifestyle can prevent dementia can be applied to any of the following:

Heart disease, Lung disease, obesity, high blood pressure, Diabetes, help with arthritis..and any other condition that being active can help with.

Articles like this make me so angry.  Why?  Because it gives false hope and mis-information.   At present there is no cure for Dementia.  Research has yet to find out what causes dementia, they are beginning to understand what is going on a bit better, but not why this happens.  If they did all of us living with dementia would be on some sort of medication to reverse it, or totally halt it, and we are not.

These articles are really about unhealthy lifestyles and what can happen in the long term.  So why not write that?   Some dementias can be directly through lifestyle such as Korsakoff Syndrome caused by alcohol misuse or nutrient deficiency.   Some dementias can develop through the result of traumatic brain injury.

Here are some REAL sites to find information about dementia from professional bodies and people leading the support, help and information sharing for dementia.

So, I wish these newspapers stopped writing this rubbish just to fill space because it is not helping.

Rant over……..

 

 

 

Alzheimer’s: When prosecution of child sexual abuse is unable continue due developing Alzheimer’s

Before I start, I must state that this is my opinion only.

Lord Greville Janner has allegations going back to the 70’s for child sexual abuse when he was an MP in Leicestershire, UK.   It is said he befriended manager(s) of children(s) homes for access to young children.    I remember one case in particular regarding a children’s home in a small town where I used to live.   A friend of mine worked there and gave evidence during the court cases when it was first investigated.

Greville Janner’s name was mentioned way back and I am not going to go into details because you can read the facts in the news today the evidence regarding whether he was involved in child sexual abuse, and the failure of the CPS to bring him to court on several occasions.

The Crown Prosecution Service has deemed him unfit to bring to prosecution because he is living with Alzheimer’s disease.   So the case will not go any further meaning those adults who are living with the heritage of being a victim of sexual abuse at one of these children’s homes will never be able to see justice.

This is a very emotive subject, but one I think that is important.  Without the recognition of a court judgement, will these people feel betrayed by the justice system?

Lord Janner may be unfit but if there is a case for prosecution, surely he should lose his title?  As a Lord he remains to sit in the house of Lords, Alzheimer’s or not.

Surely having Alzheimer’s does not absolve someone of previous crimes committed against people, unless they are not able to mentally distinguish right or wrong at the time of the crime.

Is it right to let them off?  Should they still be prosecuted even if they are unable to serve a sentence.  For the survivors of the abuse it would mean a public acknowledgement of this man’s crime towards them.

I feel very strongly about supporting survivors of any crime, because they need our support in a world where justice may seem very cruel at times.

My personal view is that yes – he should be prosecuted because I refuse to believe that his memory of his whole life in the 1970’s and 80’s has been forgotten.   I can also see on the other hand that this would also be very difficult to do.

This is not an easy debate to have but one which I feel must come.

“I feel like something at the bottom of a woman’s handbag”

Saturday – 28th June 2014 – Alzheimer’s Meeting

I was invited to a meeting to form a pilot scheme for younger people with Alzheimer’s and Dementia. It was quite a way to drive and we got to a place which was in fact in a building in a Chemical Company which supports the charity Alzheimer’s Organisation; their conservatory which is on the side of a very nice cafe/restaurant.

There were workers from the Alzheimer’s Organisation from three different surrounding areas in county and I got to talk to two of them. The are all enthusiastic and clearly caring people.  People arrived gradually until there was a good roomful of people living with dementia and their partners and carers. I initially talked to two of the staff full of enthusiasm and I passed a couple of flyers for Dementia Mentors website which they said they would look at. As others arrived they seemed to know each other I think from another group they attend. The conservatory had tables and chairs set out in a cafe setting and people came in and sat randomly around the room or in groups of friends. Because of how we were all sitting facing some with our backs towards others it was not conducive to chatting and getting to know anyone you didn’t know, which for us was everybody. No sooner everyone had arrived, we were told to split up into three groups and talk about what sort of group we wanted. The friends stayed where they were, others gravitated towards the far side of the room and hubby and I were asked if we would join the table behind us with just two people on because the guy had mobility problems. The guy I shall call Sid clearly had mid stage dementia and did not speak or appear to have awareness of what was going on. His partner on the other hand did not stop talking. We had a worker with us who was going to facilitate this discussion between the four of us.   (All names have been changed to protect peoples identity).

Phil the worker was enthusiastic and started throwing some ideas about for us to talk about and ‘Sally’, Sid’s partner started to talk about what she wanted from the group. I don’t want to see leaflets on tables, she said, I don’t want to hear anything about dementia, I want a social group where we can go out and enjoy ourselves. Right, that is perfectly clear. I am tired, she explained, of everyone talking about dementia, I want somewhere where that is not about illness at all.  (Actually Sally, I think you need a support group for carers and some respite care for Sid, I thought at the time).

I had up until this point given some ideas, discussing a newsletter, learning new things in their new life with dementia, such as photography, cooking, creative writing mini courses, days out doing group photography, walking etc. The more Sally talked the more puzzled I began feeling. Hang on, I thought we were here to talk about a group for people with dementia, at least that is what the conversation I had with the ALZ worker I had met after being diagnosed who said there was no support groups suitable for me. I could not assume that Sally was Sid’s carer and I had to know, so I asked her if she had dementia? No, she answered, I am with Sid. I had this sudden realisation that no-one had asked Sid what he wanted, so I asked him. With his progressive dementia he couldn’t really give an answer, he goes to another day care place and does a lot of memory activities with them, and seem to be confused about where he was as he was talking. He sat not speaking having difficulty holding his mug of tea, Sally telling him to put it on the table before he spilt it down himself. I could see my hubby watching and wondered what he was thinking. Sid did not appear to want to put the mug down, or do as he was being told. Sally was off again saying the things she wanted to do, and I spoke to Sid. ‘Only people with people who have dementia can understand what its like to live with it’ I said to him, and he nodded in agreement. I asked him about the day care he goes to and he tried to talk to me about it. He then said, probably the most important thing that was said in that room “I feel like I am something at the bottom of a woman’s handbag”. Do you mean being here I asked him pointing around, ‘No’ he answered. Ahh you mean all the time I put back to him understanding how he was feeling.

The more I listened to Phil and Sally talking, and hearing the animated voices around the room the more I realised my expectations were far too high and I was not enjoying the experience.

The discussion was over, time was up and it was time to go! Before I left I briefly spoke to a worker and said that I thought it was going to be about people living with dementia wanted, and was a little disappointed to hear so many carers saying what they wanted. “I guess it is about both” was the answer.

Okay, how this meeting made me feel:

  • Angry
  • Silenced
  • Invisible
  • Like being treated like a ‘patient’
  • Cheated
  • UPSET

I thought this was going to be about what we, the people with dementia wanted out of a group for support and social activities that we could do with others, and that includes partners and carers who understand that sometimes we say the wrong thing, behave in a way that may not be quite right.  It is right the partners should be there, but let all those who live with dementia, have their own voice, their own control, and their own place to keep their minds active, not something that is organised by everyone else.

How many websites, groups, and advise site both professional and amateur are there for carers. How many forums are for carers?  Many.  Why is this, it is because what do you think when you hear someone has dementia?  You think of an elderly person towards the end stage of the disease, not always knowing who family is, someone who has lost the understanding of what is happening around them, someone who may be shouting out and being difficult and finding it hard to communicate.

Well that is at the end stage, not the beginning, how do you know that you do not already have some kind of Alzheimer’s in the making? Give it a few years and when you know something is ‘not quite right’, something simple such as your visual perception not working right, not keeping up with work, you will be wondering whats wrong. If.. if that happens and you are in your 40’s, 50’s and 60’s you will want people to treat you as they would want treating themselves, not to talk as if you no longer have a voice or part to play in the control over your own life.   Memory Loss is not loss of intelligence, get it?

I just want to finish saying:

I AM NOT INVISIBLE, I AM INTELLIGENT, I CAN STILL TALK TO YOU, UNDERSTAND YOU AND HAVE A DISCUSSION ABOUT WHAT IS GOING ON IN THE WORLD.

Please don’t think that by helping our husbands or partners that it equates to giving support to me.

Thank you for listening if you got to the end of this.

Shame on you CURVE of Leicester!

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I had booked the tickets for two friends, my husband and myself ages ago to see JESUS CHRIST SUPERSTAR written by Andrew Lloyd Webber and Tim Rice in 1971 at CURVE in Leicester.  No, I have not missed a word out it is not ‘The’ Curve, but simply ‘CURVE’, now try to talk about it without saying ‘the’ – impossible!  Woe betide anyone putting a ‘the’ in front of it when in Curve building itself.   See even that sentence begs to have a ‘the’ inserted.  I digress.

My friend Karla and I had been to the Curve there before, the last time to see Rocky Horror Show, that’s another story in itself, and she also works there on an adhoc basis and that is also another story in itself, so we like theatre.  I must add here that she is also part of the production team at Market Harborough Theatre, so knows a bit about theatrical performances.  I am digressing again.

The words Amateur Operatic Society never made any impact on us when we booked the tickets, because after all this production was at CURVE and they are up there darling with the best of theatres.  My other friend Sheila loves musicals and knows ever word to the songs so she understands a thing or two about performances.  Hubby, well he is from Essex and LONDON is where he used to go to see shows so is used to the originals by the best performers.

Hang on there, before you think that this is going to denigrate the LEICESTER AMATEUR OPERATIC SOCIETY it is not.  HOWEVER, sadly it was not their finest hour.  Set in modern day the stage set was metal steps either side the stage towards the back as a V shape, with a triangle of light panels at the top which was lit to highlight the performers when they were at the top.  As always a live band played down in the pit in front of the stage.   Sitting comfortably in our generous seats with plenty of leg room – well done CURVE, we were excited to enjoy the evening.  This is about the appalling sound levels set by the very professional team at Curve who somehow ruined the show by their negligence.

Karla turned to me and said “I hope Jesus is a tall dishy looking guy” or words to that effect, I agreed, there is nothing wrong with eye candy especially with a voice.   Lights down, and there were people rushing back and forth on the stage – not sure what that was about but it was part of it, then Judas Iscariot came on and screeched his way through the opening song; he did have a high voice, but the level of the music was so high it did not help.  Hmmm okay.   Others joined him and I wondered which one was Jesus, and realised that the guy who was nondescript with short hair and very little stage presence was him.  Again when he sang his voice was drowned out by the enormous sound of the band.  Mary Magdalene was excellent, she had a lovely voice and very good stage presence and her solos were gratefully heard amongst the music.  At times the music drowned the singers, at times the singers appeared to be screeching to be heard above the far too loud music.   How could CURVE sound engineers get it so WRONG?

Despite the sound levels being so wrong, it was an entertaining evening not least because of the cast themselves.  They gave their all but looked utterly defeated when taking their bow at the end of the performance, as sadly, the polite applause throughout the musical was not what they hoping for.  I think a lot of family were in the audience cheering on the final applause but there was no second curtain call at the end.

What was so entertaining was that my friend Sheila sang most of the songs with a good voice!  There were two very elderly gentlemen in the cast either dressed in suits that could have fitted better (when you are on the vertically challenged side then long jackets make you look like you have no legs), and then as policemen who looked like they should have retired 20 years previously!  I kept noticing a senior lady appearing in the cast and then disappearing, obviously a valuable member of the singers, she was unable to take part in the dancing so disappeared from stage.  At the end in shiny dresses they descended down the step singing and bless her, there she was struggling to get down each step with the others.  Jesus was put on a cross with a bicycle saddle to sit on, very ingenious, and the cross was raised and fastened to the floor, by several people including one of the stage production engineers who came on complete with walkie talkie fixed to his belt etc, thank goodness he matched the cast who were all wearing black trousers and hoodies at the time.

Please don’t think I am making fun of all of this because this is exactly what I love about amateur productions.  I love how it is not the perfect beautiful people who are allowed to be stars, I love how anybody and everybody has a real part to play.  I love the rawness of the production.  My disappointment is with THE CURVE who clearly let these singers down by failing to take them seriously.  If they had done they would have made sure the sound levels were good.

Hubby left after the first half and did not return because he could not cope with the sound, as did several others.  He waited outside, had coffee, walked around the corridor in the round building, and met a critic who had come to review the performance, who was equally appalled at the incompetence of the sound engineers to get the sound levels right.  As we left we saw him talking animatedly to a member of the production team.

I would REVIEW this by saying I had a great fun evening,  I enjoyed their efforts – WELL DONE Leicester Amateur Operatic Society.

 

This might offend – I don’t believe in god

These are my thoughts on religion

I don’t believe in god and like to think myself as an Informed Atheist.

My parents are Methodists and my sister and I were brought up to attend Sunday school every week and I finally stopped my association with the church when I was 18.  At 16 I had become a Sunday school teacher myself and grew to question the material I was given to use in the lessons.  I did not believe that god made the world…nor anything after that.

My mother told me I was wicked and evil for not believing in god.  The more I thought about why I do not believe the more I wanted to explore religion in general.  It felt like being on the outside of a tank studying the contents but not being part of it.  What I saw in religious history was social control by men during a time when they wanted power in their societies, and there being no better way of doing that with a god that no one could dare to question.  With that came the power of the religious men who ruled the nations each with their own brand of religion.  Listening to people talking about how everything ‘is gods will’; is to me hearing how no-one wants to take responsibility for their own actions or accept that things do happen without a reason – deal with it and move on.  We all die of something, whether our bodies can no longer regenerate cells and repair itself, or illness; that is natural, there is no design by a deity when that will happen.  Death by war, accidental death or murder is not natural and is caused by man.

I studied the History of Science at the University of Leicester and for my final year I chose  ‘Science and Religion’ with Professor Brock and this is where I learnt how different religions have been constructed from the beginning of the human race.  There were seven students in this class and some who were devout Christians,  I asked one fellow student if it dented his belief in god and he replied that it did not change his belief in anyway.

We learnt about the bible and how long it took to write, the context of the times it was written, and re-written, culminating with the study of the learned men who research the original writings and various translations which changed the context of the writing.

Throughout history the revelation of scientific theories has meant that religious belief has had to be adjusted and manipulated to cope with the anomalies.

The increasing explosion of population puts a strain on geological and other resources so men fight for their patch.   In 1798 Thomas Malthus wrote An Essay On The Principle Of Population which I read in its entirety.  Thomas Malthus was a minister who within his writings talked about the earth only being able to sustain the number of people it can feed, the same as animals.  Yes, his writings were very controversial and certainly racist, but he approached the idea of people’s relation to their environment theories that Darwin and Wallace would have read and pondered upon in their evolutionary theories. Darwin struggled with his religious belief after publishing his Origin Species, although came to be content with god designed evolution as well.

When I look at Islam, I wonder why any god would decide that women were inferior and not seen with equal power in society.  Here is where I say: please don’t try and convince me that women are not repressed as human beings in the Muslim faith. Nature vs nurture – Muslim girls grow up being taught their place as decided by Allah/Patriarchal leaders and male followers .

Circumcision in girls – so that is acceptable?  No of course not, but it is done in the name of religion for no religious reason that anyone can fathom apart from the repression of women by the men who rule in the name of religion.

I am not advocating women’s liberation because that is a nonsense; we are human beings with different strengths and weaknesses that give us a natural ability to survive as a species.

The more I read and studied the more I understood what religion is and what its effect has been on the world.

War is being raged in the name of religion and it matters not which faction of religious parties are fighting or in which country because it is about power of male leaders in countries where on the whole, women are repressed and dominated.

Faith;  why should people have the need to have faith in something to be happy.  Without faith most people would be unable to cope with mans ability to be so cruel, so inhumane.

Okay, some would say where does ones sense of morals come from if not from religion, although its debatable whether all religion have a good sense of moral living.  The need to survive in animals creates tolerance throughout the animal world, and we are just another animal who happens to have evolved a larger brain.

I have Alzheimer’s and Fibromyalgia, and hypermobility so that I now have arthritis.  I have a headache in the right side of my head every day which I have had for several years.  It turns out I may have brain damage from trauma to my head as a child (my mother always aimed for my head when she hit me regularly).   These things just are; some is a genetic predisposition, the damage of my brain comes from someone who believes fiercely in god.  Ironically my mother’s own vascular dementia was first noticed in church, having gone to the toilets and not able to find her way out again.

I cannot understand why anyone needs to have some higher person to be able to love themselves, to know how it feels to be a nice person and not hurt anyone else, and enjoy each day without the promise of a (non existent) heaven. To know what is good and what is bad.

I simply, have no need for faith or religion.